Hodgkin's Disease - OUR STORIES-Pull up a chair and get to know everyone

[Melody]

Here's my story.

My name is Melody, 29 years old and was born in Montreal. In Summer '92, got sick with mono. Then I met my husband to be on a blind date. We dated, talked about marriage, etc. and in March '95, he got a job in Oshawa, Ontario. I moved down in June '95 and starting working in Downtown Toronto. We both lived with family for a year before buying our first house. Moved in in '96, got married in '97, had our daughter in '99.

Sickness: Diagnosed May '00

Back in '95, started with this nagging cough that would come and go. Never thought anything of it. Saw the doc, got antibiotics, etc. When I was pregnant in '98, the cough persisted, broke out in a rash on my arms and legs, and became extremely fatigued. Blood work was done and showed "anemia". So, iron pills for 3 months.

Had my daughter in '97, was still fatigued and the cough got worse. In the meantime, more antibiotics were given, no apparent change in feel to nodes and no chest xray requested. The cough would come for about 2 weeks then disappear for 3-4 months. I found it really strange.

March '00, I was let go from work 'cause of cutbacks, (co. now closed) and my dad was coming down to do some work on our house. Outside doing gardening, painting, I went inside to wash my hands and had an itch in my neck just above the right collar bone. There was this lump under my skin. I freaked [img]images/icons/shocked.gif[/img]

Had supper, then went to the walk in clinic. The doc requested a chest xray and blood work. Xray showed a shadowed area. Later that night, my gp called and said, "Based on looking at other patients xrays, the radiologist and myself feel that you have lymphoma with an accuracy rate of 95%". Now try and sit back on the phone and digest that in one gulp!! Ended up seeing the surgeon 2 days later to be booked in 4 days later for the biopsy. Surgeon confirmed without a doubt that it was lymphoma, but not the type. Waited 2 weeks to finally be told, Hodgkins Lymphoma Nodular Sclerosis Type IIB. I sat there and just broke down in tears [img]images/icons/frown.gif[/img]

Saw the onc. 2 weeks later to have all the pre-tests booked and plan out the treatment. According to the onc., my lungs were clear and that I would be fine for the next 2 weeks while he was on vacation. Wrong!!! Three (3) days later I landed in ER with breathing problems and was put on oxygen. I had fluid in the lungs. Nodes were located in the neck and chest area. The chest ones were creating a fluid build up in the lungs. Both lung cavities were full to the top. Went home, back again in 2 days worse than ever. My onc.'s colleague was on duty and admitted me to the hospital. Within 2 days all tests were done, the next day, I had my first treatment of ABVD.

My treatment plan was ABVD for 6 months, every 2 weeks, followed by 1 week of Neupogen shots. During that period, I was home with oxygen for 3 months, 7/24, having my lungs drained every 3 weeks, when finally one lung collapsed. Rushed in for a chest tube procedure. Not fun [img]images/icons/frown.gif[/img]
Finished treatment in Dec. '00 two weeks before Xmas. I was so excited [img]images/icons/smile.gif[/img]

Radiation was to start on Jan. 25/01, but I relapsed on Jan. 24th. Go figure!! Back to the drawing table, however, this time with a new onc. (he's the greatest to this day!!) The plan was to start Mini-BEAM for either 2 or 3 months. It consisted of being in the hospital for 6 days getting chemo every day, however, the chemo only lasted as follows:

Day1: 2.5 hours
Day 2-5: 30 minutes
Day 6: 10 minutes

I completed the month of March and April. Then I was told that the follow up was a stem cell transplant. Started the high dose chemo in June. Tried collecting cells in July, no go. Underwent bone marrow surgery end of July. Had the transplant in Aug.01. Spent 1 month and 4 days in the hospital. Real fun! Finally got home and started the follow up radiation in Dec. '01. Just finished Dec. 24/01. Now I'm on watch and wait for the next five (5) years. The doc has told me that if I can get pass 5 years with no re-occurence, then I'm cancer free.

As of today, I am 5 months in remission. Does it feel great [img]images/icons/grin.gif[/img] [img]images/icons/grin.gif[/img]

I didn't go into a lot of details like other people, I was trying to make it short and sweet, but to the point of exactly what happened.

[KR,Rn]

The nurse with HD.

Now my story. I felt a lump in my neck I can't remember when, it came and went many times. I smoked and started having a persistant cough but didn't think too much of it "smokers cough" but my friends who smoked didn't have it and they smoked just as much or more. In May of 2000 a bunch of us nurses who worked together joined the Rosie O'Donnell "Chub Club" and we dieted. By Jan of 2001 I was down 30 lbs. to 155, I looked pretty good and was happy about the weight loss. But I didn't stop losing. Then I knew something was wrong and the lump in my neck was getting bigger. But knowing too much medically I denied it. I waited and waited hoping and praying the lump would go away but it didn't. It just got worst and I started to notice myself getting pale. I was also tired and itchy. I had severe back pain but thought my job as an orthopedic nurse for 15years had destroyed my back
I finally went to the doctor, an onc. (family friend, in July. My hemaglobin was 8 and he was very concerned because there was blood in my stool. Had a biopsy on July 23 which first came back as non-hodgkins but finally pathology the next day confirmed HD, stage IIIB. Had bone marrow biopsy on the 26th of July. Had porta-cath inserted, first chemo ABVD, and 2 units of blood on July 30th. Had an endoscopy and colonoscopy on Aug 2 to see about the bleeding. No bleeding, conclusion over-use of aspirin and naprosin and stress(of not facing the problems) caused the bleeding and I healed quickly.

Continued with 6 months, 12 cycles of ABVD, without many complications or side effects. CT scan on Jan 9 showed much improvement but disease was not gone. My onc. wanted me to go and see a SCT specialist, which I did on Mon. Jan 21. Next week more tests and then we will see what is the next step.

I am 37 and have been married to a former marine and present police officer for 16 1/2 years and have wonderful 4 children; Colette 14(graduates 8th grade in June), Brendan 12, Bryan 10(will be on Feb 16), and my baby Connor 8. My parents and in-laws are all deceased and that makes the prospect of having a SCT all the more scary. But I do have wonderful brothers, sisters-in-laws and friends.

Thanks for being interested and for caring!!!

Kathy

[ January 23, 2002: Message edited by: KR,Rn ]

[ January 24, 2002: Message edited by: KR,Rn ]

[Sharone]

I had written this up a while ago - it was a quasi-journal of the diagnosis and crystalized a lot about what happened the first few weeks - hope it's not too long.
Finding the tumor was a miracle. My husband had no symptoms to indicate anything was wrong. He did have some mild chest pain, which the doctor attributed to gastritis.

My husband might have continued to down antacids indefinitely had his grandfather not passed away. His grandfather died suddenly after a routine procedure that proved to be too much for his weakened condition. We lived overseas, and by the time we heard the news it was too late to make the funeral. My husband and I booked our tickets so we could be there for the shiva (mourning period).

Even though the doctor had already diagnosed the problem (“gastritis” , my husband did not want to fly with chest pain. He made a doctor’s appointment to get an “all clear” before our flight the next morning.

The doctor told my husband that the pain was caused by his backpack that weighed 30 pounds, which he had been walking around with for 45 minutes each day. Then the doctor noticed that my husband’s pulse was racing at 130 beats a minute. Perplexed because there was no sign of fever or infection, the doctor ordered a chest x-ray that showed something was there.

That night, my husband was poked and prodded and finally got two CT scans after a sleepless night in the emergency room. They found a growth the size of a large fist behind his breastbone. The doctor said it was safe to fly and to get a complete diagnosis in the US.

The family doctor who had sent us to the emergency room was shocked to hear about the tumor. “But you’re healthy -- no night sweats, no fever,” he said. My husband’s high pulse that had alerted the doctor returned to normal while we waited in the emergency room. And it has remained at a healthy pulse ever since.

Once we got the diagnosis, we rushed back to our apartment. We had seven hours to pack our apartment into 4 suitcases. Somehow, I had the presence of mind to clean out the garbage cans, and set the apartment in order. From the airport in the US, we were driven directly to meet the oncologist. A family friend who was a pediatric hematologist got us an appointment with the assoc. chief in the department that day.

Within a week my husband had a mediasconoscopy. The surgeon insisted on telling us all the awful diseases that the tumor could be. After the surgery, the surgeon came out and told us he thought it was thymoma. He then proceded to tell us that it might be incurable if the cancer had spread to the heart. As it turns out they got the wrong tissue - thymus gland instead of tumor. Woops - small mistake.

Two weeks later he had a chamberlain procedure. They warned us that he might need his chest split open if they couldn't get any cancerous tissue. We waited another week before hearing that the tissue they had gotten was undiagnostic. My husband, still recovering from two surgeries, might need yet another.

We wanted to avoid another surgery and consulted with an expert pathologist. He needed tissue from the other hospital to do the tests. I called the hospital on Monday morning to find out if we could hand-deliver the slides. They assured me that the slides had already been shipped. I called the doctor who assured us that the slides had been received. The next day, I discovered that the slides had neither been shipped nor received. After a few hours of phone calls, I located the FedEx truck that held the vital package. At first, FedEx told me that the planes had been grounded by bad weather. I looked out my window and observed that the sun had been shining for the past five days. And anyway, why would they need a plane to get the package from Long Island to Manhattan? They said that the trucks were delayed because of mechanical difficulties.

Meanwhile, during all this waiting, my husband began showing symptoms of the tumor. He was getting increasingly tired and began having night sweats. We were living at my in-laws and everyone’s nerves were shot from the tension. The doctor finally received the precious package, did the tests, and a diagnosis was made. Our ten-month anniversary brought the good news that we could begin treatment. It was Hodgkins - NS stage II now B.

At first they were going to do just radiation since he didn't have symptoms. but then since the tumor was exactly 1/3 of his chest size and he started to have symptoms, they went with 6 cycles ABVD followed by radiation.

Noone warned us that the first chemo was by far the WORST. He was so sick with that one. They told us later that that one gets most of the tumor. Plus, our doctor didn't prescribe any zofran until the next time. The family friend rushed some zofran over and some prilosec and zantac for the stomach acid that came along with the first chemo. So for those going to their first chemo ask the doctor to give you all the drugs BEFORE you might need them. My husband even had to go to the emergency room the day after chemo with chest pain. Of course, it was Christmas weekend, but we eventually saw a doctor. From then on, all chemos were scheduled at the BEGINNING of the week. After that each chemo went fine. My husband was up and out of the house by 8 each morning. There was a lot of anticipatory nausea during the chemos but no real nausea - the Zofran worked wonders. The radiation was okay. and the PET scan and CT scans came back clean. We are now waiting for the 6th month CT scan.

I am 25 and my husband is 27. Our second anniversary is in a month. Our first was during chemo. I teach and my husband is in a post-graduate fellowship. I used to design web sites but after the cancer, I figured that we only have one shot to make a difference in the world, so I decided to pursue my dream of being a teacher.

[Lynn]

Fionn, I think this is a great idea having everyone write out "their story." I think it gives the "Newbies" some perspective, and gives us "Old-Timers" something to look back on! And, for those of us still suffering from Chemo Brain, it helps to put everyone's story with their name!
I am 34, and healthy as an Ox (or Heifer as Kiwi likes to tease! Ha ha! --It's OK, Kiwi is the ONLY one allowed to call me a Heifer! )
I guess my "saga" starts with a years worth of ITCHING! Itching, itching, and more itching! My husband and I were recently stationed at an Air Base in Germany when the itching began, so I ASSUMED that the sudden change in environment and climate was the cause. Well, 12 doctor visits, 6 treatments for scabies, 3 treatments for ringworm, and 14 bottles of benadryl later I was told that STRESS was the cause..."GET A LIFE" was the basic advice.

About a year after "getting a life" I felt "popping" under my skin on my left neck (where the Hodgkins later popped up), occasional chest pain, and general fatigue. Not wanting to go back to the "Get-a-Life doctor," I decided that I was just getting OLD, and that I needed for roughage in my diet. [img]images/icons/smile.gif[/img]

A couple months after that I thought I was having a STROKE! My left arm fell to my side while hanging a picture, and went completely numb. Being a Nurse, I ran to the bathroom, took three aspirin (isn't that what people do when they're having a stroke)(I'm Kidding!) and sat down waiting for the world to turn black. The world didn't turn black, and about 10 minutes later I had returned function of my left arm. I thanked God that the stroke was only temporary, and went on "Having a Life." I continued having "strokes" (which turned out to be pressure from the lymphoma on the brachial plexus nerve) for the next couple months, then developed a new visual problem. I was diagnosed with Occular Migraines (not related to HD, by the way) and was told that ONE cause COULD BE cancer. So, being the "strong mature" person that I am, I went home, burst into tears and looked up BRAIN TUMORS on the internet. In fact, I DID have several symptoms consistent with a brain tumor, and was convinced that death was probably imminent. One (negative)CT of the brain later, I was once again told to "get a life, take iron (for a low H&H blood count), and exercise." (Nevermind my SED rate of 66, and a CBC differential that was off the charts).

About two months later I felt an "egg" on the side of my neck. I felt well, and thought it was just an infection of some sort. Three weeks later, I ran into an ENT friend at the hospital where we both worked. I asked him to feel my lump, and 15 minutes later I was in the CAT Scanner. One biopsy and two weeks later I started chemo.

I am mortified by some of your stories...where you have "CLASSIC" symptoms of HD, and your doctors "blow you off!" Especially those of you who are told "you are too young to have cancer!" Hodgkins IS a cancer of young people! I am considered OLD by most statistics for HD.

So, 6 weeks after finishing chemo and radiation I am now awaiting my first post-treatment Scan.

I THOUGHT I was going to be SO HAPPY someone would have to peel me off the ceiling once treatments ended...but I find myself to be having some "post-chemo blues." Don't get me wrong, I am VERY happy and very thankful that things have gone so well...but I find myself crying very easily (for happy things as well as sad). I have also gained 20 pounds which doesn't help!!! I find that I'm a little more "shy" than I used to be...most of that is probably because I'm in a completely new environment...and still a little self-conscious about my hair, pale skin, etc...

I can't say that I'm happy to have had cancer, but I can say that it has woken me up in a lot of ways... I am definitely more thankful for the little things (family, friends, dogs , sunrises and sunsets...)
If Hodgkins has taught me one thing, it is that life is very fragile and should be cherished.
"Life is a Journey, not a Destination."

Best Wishes to those of you just starting out, and Thank You to my "Old Board Buddies" who have helped me so much!!! [img]images/icons/smile.gif[/img]

[Lynn]

Reading my own post, I think I should have added some of the "bumps" on the Chemo/Radiation Road for the Newbies. (I should have also used Spellcheck! Excuse the Typo's!!)

Firstly, I would strongly recommend a port-a-cath. Unless you have arms (and veins) like Arnold Schwarzeneggar, your little veins will probably not survive a full regimen of chemo without pain. I tried "going without" and regret it. My veins "cried Uncle" at about chemo #6. --Then I got the port-a-cath.
If your doctor gives you a choice between a Hickman (out of skin device) Vs. an under-skin device ("Port-a-Cath" "InfusaPort"), take the port!

If my first post-treatment CT scan comes back clean, I will have my port removed next month.

#2) My biggest worry when starting chemo was my HAIR! As it turned out for me, my hair only thinned (well, VERY thin at the end, but not like Kojak). I would recommend getting a short hair cut upon starting chemo...AND be very nice to your hair. I was careful not to let the shower "blast" my hair/head...and I only combed it once a day. You will probably want to protect your scalp from the sun as well.

One piece of advice, go out and buy pillow cases that match the color of your hair. For me that was the worst part---waking up and looking at the pillow full of hair. It looked like the floor of a barber shop most mornings! HA!
(Don't be surprised if your shower backs up too! You'll probably want to get a drain filter!)

#3) If you are on Bleomycin, be on the look out for Pulmonary symptoms (cough, shortness of breath, chest pain). Pulmonary fibrosis is not uncommon with Bleo (the "B" in ABVD).
I had a Pulmonary Function Test (PFT) prior to each chemo. As it turned out, I only got Bleo every-other time because of the drop in my DLCO.

#4) I was on Neupogen days 1-7 following every chemo for a low WBC count. I was able to give myself the injections (painless if you warm it up to room temperature) and saved myself a lot of trips to the Oncologist. (Be careful though...I hear that some insurances won't pay for the Neupogen (also called Growth Factor) if you give the injection yourself).

#5) As for Radiation, you'll see on this Board that symptoms vary from absolutely NOTHING to severe pain, dehydration, and hospitalization.
I was pretty lucky I think...other than the very first Rad. treatment (where I had burning of the throat) my only symptom was a red chest and neck--kind of like a mild sunburn. I found that if I drank cold water immediately following the Rad Tx, my throat didn't bother me at all.

#6) HORMONES! (Men, you can skip this part if you want!)
I found that my hormones and "cycle" were completely out of whack--during and now after treatment. I have no real cycle to speak of--but I have cramps every month.
I also have facial and neck hair that makes me look like a blonde chimpanze. My Onc assures me that this is normal, but when I point it out to the Chemo Nurses they seem pretty SHOCKED by it all!

And, as I mentioned above, don't be surprised if you become a walking "Tear Factory!" Even my husband asks "When is the Old Lynn going to come back?" I really am an emotional basket case most of the time. I was put on Zoloft (anti-depressant) for a while...but it only made me feel worse. I have a friend who is about 5 years post breast cancer. She assures me that the emotional roller coaster is normal, and that Yes, the "Old Lynn" will once again return!

And finally, I don't know if I'm the only one, but I feel like since finishing treatment I have the "Post-Partum Blues." I'm thinking that it's just a little anxiety over having my life suddenly turned upside-down. Hopefully upon having a CLEAN CT scan this month, I will return to my usual Happy self!

[LauraMathiesen]

Hi - I am Laura, 42 years old with two wonderful boys, Evan 10 and Alexander 14. My story starts in the summer of 1999. I went to my internist complaining of fatigue. He did blood tests, said I was slightly anemic but nothing to worry about. He then said I was depressed and put me on Prozac. I continued being very tired and started itching. Also during this time I had pneumonia (diagnosed without a chest xray). The doctor put me on predisone for the itching and a cream to rub on my hands that were covered in sores. I also had a numb hand and was then sent to a neurologist who did a brain MRI looking for MS. Brain came out normal (don't know how that happened, lol) so he decided to do a sleep study thinking my fatigue was from that. I then developed drenching night sweats and went back to the internist who did hormone testing which also came back normal. The sleep study showed I might have apnea so they wanted to put me on a breathing machine. In the meantime, my mother, who lived with me, was diagnosed with terminal cancer. I stopped seeing the doctors to care for her till she passed away. I resumed my doctors visit and in January 01 I was sent to a psychiatrist. The doctors couldn't find anything so it must all be in my head. Since I do have a history of depression, I accepted that and started seeing her and a therapist regularily. Then in March I was folding laundry and couldn't breath, my left arm and side of my neck swelled up to 3 times the normal size. I went directly to the ER. A simply Xray showed a mass 8.5x11 inches! Filled my chest cavity. Along with many lessions in my lungs and all the lymph nodes in my chest so swollen they couldn't find my heart. The tumor had gotten so big it completely cut off the main blood vessel to my arm (which caused the swelling) and paritally blocked the jugular. I was admitted and began the barrage of tests to determing it was Nodular Sclerosing Hodgkins Disease, Stage IVb. I have had 8 cycles of ABVD. My response to chemo was considered poor as my counts struggled and I had to be on neupogin for 7 months and was in the hospital 3 times with neutropenia and pneumonia. My cancer was active until the very last treatment which I am told is a poor response. I am currently undergoing radiation to the mediastinal area and will be done in 3 days! My doctors tell me this will most likely come back and I will then be a candidate for a stem cell transplant.
These stories take some space to tell don't they?

Thanks for reading. Happy day to everyone.


Laura

[fionn]

OK, here’s my story . . .
In early July 2001 I found a smallish soft lump in my neck just above the collar bone. It didn’t go down after a day or two so I made an appointment to see my GP that next week.

I went to see my GP, he duly admired my lump, and asked me questions. He decided to give me a shed load of blood tests to try and figure out what it was. I think he was thinking glandular fever at that time. Although my happy feeling fine good health was a bit of a down on that theory. Well I had the blood tests and they came back with seriously low iron – I was anaemic.

So I began on my three iron pills a day (scrummy!) and a few weeks later I had another appointment with my GP to talk about why I was anaemic. After deciding I had no heavy periods, ate plenty of iron etc and in short there was no good reason why I should be anaemic he prodded me in the stomach a few times and referred me to a doctor in the hospital, he said it was to see why I was anaemic.

In early September my appointment came up. My parents were in France at the time so I walked down to the hospital from school. To my surprise when I saw the doc he wasn’t particularly interested in my anaemia, much more so in this lump I’d practically stopped thinking about. It was a bit harder no as well and didn’t move about as much. Anyway he prodded me, asked me questions and victimised the poor student doctor who was looking in. I asked him what he thought it was – he said it could be either an infection, something odd called sarcoidosis or something, or lymphoma which was a malignant thingy-bobby. It was a pretty odd feeling when I heard the word malignant . . . .

Anyway he sent me off for chest x rays and blood tests and told me to bring the x-ray films straight back. I did . . . and when I went in again he said he’d decided to schedule me for a biopsy and urgent CT scan. I asked him what he thought it was, he ummed and ahhed and said that he was pretty sure it was a lymphoma. OK. I probably had cancer. I went home and began researching lymphoma on the internet. I hoped I had HD not NHL.

Well a few days later , about a week I think, they squeezed me into surgery thing at the end of the day and I had my lump chopped out. The next day I had my CT scan. When they’d finished the technician came out and asked me how long I’d been feeling poorly. I told him I hadn’t. Note: when this happens take it as a bad sign. I had a 13x6x8cm tumor in my chest pressing against my wind pipe. I’d had a cough the past few days. I thought it was the remains of the back to school cold. My haemotologist thinks otherwise.

About 5 days later I went into the hospital. They’d told me to go up to the cancer ward. This is also a bad sign when you get biopsy result. He told me I had Hodgkin’s Disease and that the CT scan had shown it wasn’t beyond the diapragm and I didn’t have B symptoms which were good signs. And had a roughly 70 – 80% survival chance. He said they’d give me a chemo course of about 6-8 months. Then he reffered me down to the haemotologist who would be treating me (well not some much reffered more like walked me down there – luckily the hameotologist had a clinic that day so there was no delay).

The haemotologist also prodded me and talked to me about the fertility thing and looked at my CT scans. He said they’d use ABVD chemo which was a standard protocol and that he reccommended that I had the egg freezing especially as the delay would be minimal in my case. He phoned me up that evening to say that he’d decided that a weeks radiotherapy was necessary first of all because if the tumor swelled with chemo I could stop breathing (later he told me I could have died within days – that shut me up!) and I had an appointment the next day at a fertility place, and a bone marrow biopsy the day after.

OK, I’ll hurry up now as it’s turning rather long. I began radiotherapy the next Monday whilst having hormone injections to stimulate ovulation. I waited a week having more hormones and had the eggs out the next Monday (I slept through it). Two days after that I bagan my fist of 6-8 months of chemo. Right now I’m about to have chemo number 7, I’m still not sure how many I have in total. I’ve been on Neupogen since chemo number 2 because of pathetic neutrophil counts.

It’s not as bad as I thought it would be, my hair is down to about a cm or two right now and very thin, I wear a hat because my ears get cold. All the other body hair is gone or going (no leg shaving yeehah!). I haven’t really had much in the way of sickness, just sleepyness and some arm pain especially with chemo 4ish. Chemos are even kind of fun because my friends come with me.

I was 17 when diagnosed, 18 now. I’m in my last year of school and I’m trying to continue as normal. I got into the uni I want to with an offer that means I’m just about certain to get the grades! So next year I’ll be studying natural sciences at uni, hopefully. In my freetime I like juggling, reading, cooking, writing silly stories, and making my webpage www.geocities.com/fionnthegr8

All in all cancer isn’t nearly as bad as I thought it would be. At times it’s even kind of fun!

Sorry this is so long!

Fionn [img]images/icons/cool.gif[/img]

[imagelfling]

Hello - I am 17 and I live in Kansas with my parents and my 15 year old brother.
This all started for me about two years ago in February 2000 when I noticed my first little lump on the left side of my neck. I was worried about it, so we went in and had it checked out. The doctor gave me some antibiotics and said that I could have it removed if I really wanted, but that it was probably just an infection since blood tests and an x-ray had come back normal.

I didn't think much else about it for a while until a couple more popped up. Once again, blood results were normal, and a lot a people kept telling me that it was normal for lymph glands to be wacky when you are a teenager. The lumps kept coming, though, and pretty soon it felt like I had "peas and carrots" floating around in my neck and a lemon under my left armpit. I got tiny fevers and sore throats, and my lumps would hurt and swell up until they were visible to other people.
When I went to the doctor's office in July 2001, I saw a brand new nurse practitioner. He was concerned with the amount of gland swelling and my elevated white blood count and wanted me to have a biopsy. As soon as the surgeon touched my lumps, he thought it was probably lymphoma and couldn't believe that my previous doctors had let it get as far as it had. I got the official diagnosis the second day of school; I had stage IVa nodular sclerosing Hodgkin's disease. I had involvement in all the lymph nodes around my neck, under my armpits, around my espohagus, in my right lung, and in and around my spleen. My doctor cousin said that he was glad I had HD; that if you had to get cancer, that was the kind to get. That's one way to look at it I guess!

The next few weeks were a blur. I met my oncologist, went through all the tests to set my baseline, and went in and told my senior class what was going on; I wanted them to hear it from me and not just as a rumor. I had a Hickman-catheter inserted in my stomach area (I was supposed to get a port, but that changed when they found out I would need higher doses of chemo) and got my first chemo treatment (BEACOPP), and I am not sure whether it was the gas from the surgery or the chemo drugs, but most of my first hospital stay was spent throwing up; almost every fifteen minutes at times! My body hurt so bad from dry heaving that after a while, my mom was having me drink sprite just so I would have something to throw up. It was not pleasant.

As far as side effects go, it seems like I've been through just about everything. For my first four cycles, I was on Neupogen shots because my white blood count was often not readable. My bones hurt so bad from these shots that I would wake up at night crying. It would start out as a throbbing, pulsing pain in my back and then move around to my ankles and knees. My red blood count has also been pretty lousy. My hemoglobin starts dropping and then I'll get the symptomatic pounding headache which means I need to go in and get a transfusion. I have had four red blood transfusions so far, and two platelet transfusions, which reminded me a lot of gravy!

I have had a little bit of nerve damage in my fingertips and toes from vincristine, and it was very odd at first to always have my fingers and toes feel like they were asleep; I miss a lot more notes when I am playing the piano now!! My muscles have also done some interesting things. For instance, my eyes have dilated and then stayed that way. I have fairly light blue eyes, so it was pretty noticable and bizarre when my eyes looked black. My vocal chords have acted strange, too. For a while, when I talked it sounded as if I were talking into a fan; my voice would cut out every few seconds. For this, I got to have a camera put down my nose so that they could watch my vocal chords while I talked!! They decided everything was alright and it went away after a few days, but my friends thought it was funny while it lasted; I sounded like a goat!

Now that I am getting closer to the end of my chemotherapy, it seems like I finally have time to stop and think about all that I have gone through. At first, I was so busy getting used to a new life and learning all of the medical information that I didn't really think very deeply about anything. I was also worried about finishing school and planning for college. The teachers and staff of my high school have been extremely understanding, though. My assistant principal said that they would work with me as much as possible because they did not want to lose their only other 4.0 student!!!

My 18th birthday is coming up pretty soon, about the same time as my last chemo and spring break, and because I am still considered a child, I was told that I get to make a wish! I am going to have one heck of a party to celebrate all of this!!!!

Erika

[mom120102]

Notice the common denominator here is time wasted with misdiagnosis!
I'm Glenyce. I have discovered the one thing worse than having cancer - your child having cancer. Scott, at 21 and being misdiagnosed with bronchitis for several months, discovered a lump by his collar bone 3 days before a recheck by the doctor at the student health center at Kent State. That doctor tried to tell him the lump was a sprained muscle from coughing. I told him to come home and I took him to our GP who first diagnosed mono, I immediately pointed out the lump. Although he tried to cover his reaction, his face told me what I thought the minute I had heard about the lump - HD. That was the day before Thanksgiving. Dec. 1st, 2001 he had his biopsy and was confirmed with HD. As someone earlier stated - the "best cancer to have". We were told since he had just found the lump, he was probably stage1 and was almost 100% curable. By the end of the month, we felt like we were kicked in the stomach with the diagnosis of 4b.
Scott continued school with one six hour course (which is like torture in architecture) during ABVD. He never got sick - they gave him enough pre meds to put a horse down before each treatment! He was hospitalized twice - once for neupogenia and fever and once for lung damage (which is when they eliminated the bleo from his regimen). He got blood tests twice a week, so he would only have to give himself the neupogen shots as needed. (which was at least 3 between each set of treatments which was 8 sets of two. His first post chemo CAT scan was clear [img]images/icons/grin.gif[/img]
I had post chemo blues - I was used to seeing him every other week - now he is back full time at school and I sorely miss him - but am thrilled that he is fine. Scott and I both had a "when" it returns attitude instead of an "if" it returns. But once that first post scan came back clean, we both have put it into the healthier mental attitude of "it's just not coming back". (If it does, we'll deal with it and conquer it again). When the next CAT scan in March is clean, he can get his port out.
As a mother, I mourn the loss of my care - free, free spirited "child". I mourn that he will never have a cough or be tired without being concerned. I am sorry that he had to "bank" to insure being able to have a family in the future. But I celebrate the doctors and the hospital that brought him back to health. Other than a little lung damage, that is. I start volunteering there tomorrow.

[KR,Rn]

Our stories arestarting to move down.
We need some new ones. Anyone interested? [img]images/icons/rolleyes.gif[/img]